High Bp?

[autumn]

My BP is usually on the lower side of normal, 100-110/60-70, though sometimes it's lower; the other week, it was 90/60ish. My resting HR is also 80s-100s. However, the last week or two, my resting HR has dropped quite a bit, to high 60s or low 70s, which is lower than ever documented -- even while sleeping -- either with monthlong heart monitors or checkups. But with this, my BP has suddenly shot up, and I'm clocking in at 135/81, give or take a few points. This is *really* high for me. My standing HR isn't as high as it was, but I spike to 135 for a minute or so randomly, then drop back down to high 90s, low 100s.

When my nurse was here the other day, I was at 130/87 standing, and I asked him to take it again sitting, and I dropped to 110/67. He had me walk around a bit, and my HR went from 73 sitting to 112 by the time I got to my front door maybe 12 or 16 feet away. Then it started dropping a bit and bouncing around.

I've been getting headaches when I stand up a lot and have some new symptoms, including some intense and persistent itching when I put pressure on my circulation by crossing my legs or something. I suppose I'll give the doctor a call in the morning, mostly because I'm concerned with the sudden jump in BP, but does anyone know what might be causing this? This is all pretty new for me.

[louloutinks]

Hi Autumn

Sounds similar to what I get.

I have always been on the low side with the BP and have been taking my BP since diagnosed with ehlers danlos and Pots. My blood pressure seems to be all over the place. I can stand up and it can either drop by around 20mg or it has even gone up to 151/?? which I was very surprised at.

After walking upstairs my bp can go to 67/60. My heart rate usually raises on standing by 29 bpm and has even risen from 74 to 149 on standing. I have noticed that the longer I stand the faster the heart gets.

As dysautonomia is the brain sending the wrong signals, I just think at times my brain activity must be completely screwed to be acting this way!

I have also noticed that when my heart pounds out of my chest, the systolic reading is very low for some reason.

Oh to be normal again

[toddm1960]

There was a poll awhile back on this orthostatic hyper or hypotensive, and I was surprised it was 50/50 on the forum. You hear more about and see more research on the hypotensive (or passout) group, but there are plenty of us just like you. When we stand up our BP starts going up, the longer we stand the higher it goes.....along with our HR. One thing to look for also is a narrowing pulse pressure, this is a sign of hypovolemia. In my case once I stand my pulse pressure narrows to 10-15, then my BP rises while my belly fills up. It continues this all the time I'm standing. Good with yours and I hope you feel better......

[autumn]

Thanks for the responses. I guess I'm just perplexed at the sudden jump -- and that it's stayed high now even when I'm sitting. My pulse pressure has been in the 50s, which I've been told is abnormal. I do have some heart issues on top of POTS (or because of it, maybe), which is why this, combined with the lower HR, has me a little concerned. Maybe I'll stand up and see what happens; the last few days, I've taken my BP only while sitting or lying down.

[autumn]

Well, I was 122/71, pulse 74 lying down. 116/74, 95 as soon as i stood up. 130/82, 90 a minute later. BP is way higher than normal for me; pulse is way lower. It's hard not to appreciate a lower HR, but I could do without the BP spike. Left a message with the doctor's office.

[Sallysblooms]

Mine is high. I wish it was talked about more. Many docs have no idea POTS can have high bpressure and it is not good. Same feeling, faint, lightheaded etc.

[sue1234]

I think we're all hypovolemic, and the autonomic system goes crazy when we stand and the already low volume gets even lower in the chest. I think maybe a volume expander would work better than a vasoconstictor(even though it would help).

By the way Todd, I seem to get blood pooling in my abdomen also. I cannot wear any abdominal binder as I can't stand the pressure of anything on my abdomen. I don't wear any constricting clothes at my waist.

[Lovebug]

How do ya'll know you have pooling in the abdomen? I suspect I have this but have no clue how to tell. For years I've had abdominal pain so I can't tolerate tight waist bands or anything like that.

Regarding the high BP...that's me too. Mine is high and my HR can jump around if I'm having a storm...so can my BP. I can be low when lying down, high sitting up, higher standing, & even higher if I stand for a while. Before I was diagnosed with Dys last summer I had an episode where I woke up, rolled over in bed and stretched, and then all of a sudden my heart started pounding. I checked and my BP was 180/120 & heart rate in hundreds. I went to ER and by the time I got there my BP was 160/100. They gave me fluids and I came down to normal. I was exhausted after all that.

[sue1234]

Lovebug, I have that same thing happen to me! I can wake up and just roll over, and then it causes a surge of heat and heart pounding. I know that people with a pheo have this happen to some of them, as something happens when they lie down and compress the pheo. I still keep that in the back of my mind when I visit doctors about my POTS. I do have a growth on each adrenal, so I won't let that issue rest. Have you ever had a CT for your adrenals?

BTW, regarding abdominal pooling, I am assuming that's what I have. The longer I stand up, the bigger my abdomen gets and I can just feel the pressure.

[comfortzone]

Count me in ' the high b/p ' group for sure. And it's also very variable. I'm now being asked to complete my second 24 hour b/p monitor test. I begged off initially because the last one I had - gave me a skin rash as the cuff is so tight on your arm for many hours & because my insurance changed and it may not be covered. But lately it's just gone through the roof. I doubled my Bystolic (used to be that dose would have my hr plummet) - but I guess I adjusted to that dose so now even with the double dose - I'm high... I also take a diuretic and clonidine twice a day.

Part of my issue I'm sure is being overweight. Another might be that I crave salt & maybe that's not so good for hypertension. But the variability of being really high and really low in a day - day after day - is likely dysautonomia based. For me really low is anything less than 95/60... I also have extreme difficulty managing to get the fluid intake I'm advised to take in a day. I've tried everything and fail. I'm supposed to get in at least 100 oz a day. I'm lucky to down a quart. I lose my pulse pressure as well...probably chronically dehydrated as a reason. It's pretty 'not optimal' to have good hydration days mixed with dehydrated days with inconsistancy.

The catecholamines test showed a very sharp rise when going from sitting to standing. Small fiber neuropathy probably has some impact as well as the baseline tachycardia. Thankfully the Bystolic counteracts my fast heartrate and that's behaved very well for some time now. I was never much over 140 anyway to my knowledge to begin with.

Glad you're getting follow up for your rising b/p -- hopefully it will settle down for you soon ~ best wishes!

[autumn]

The "episodes" after waking up and moving in bed happen to me ALL the time! Now that I've got my own BP cuff, I'm going to have to see what the numbers look like when that happens.

Also, can someone explain abdominal pooling? Like Sue, the longer I'm upright, the bigger my stomach gets, which is incredibly frustrating. If I'm up and around for a while before I change out of pajamas, I lie down for a while so my stomach will flatten out again so my clothes fit better. The bigger it gets, the more uncomfortable it is. It's been worse the last couple of weeks, presumably when my blood pressure and heart rate started acting differently.

[toddm1960]

The only research on this that I've seen is from Julian Stewart, here's the link:

http://www.nymc.edu/fhp/centers/syncope/splanchnic%20pooling.htm

It seems for us we have a blunting of the splanchnic vasoconstrictors when standing and even worse with the valsalva maneuver. It's good to see Vandy start to reproduce some of Dr Stewart's findings, but I still haven't seen them do the sub grouping he has. This research isn't new either, it's been out there awhile.

[Lovebug]

Hi Sue! I've been tested for a Pheo and it was negative. However, I've never had a CT and my symptoms are improved with the beta blocker. Then again, a beta blocker is usually the first round of treatment for a Pheo.

[autumn]

My Valsalva came back normal, but at the time I was tested, I was having sudden BP drops, not spikes. I took my BP when I woke up this morning, and it was 105/64. But it started climbing when I stood up, and it was up to 138/70something or 80something after I showered. Knowing it's low when I wake up, after I've been lying down for hours, makes me think the spikes are indeed related to POTS. Honestly, that's kind of a relief. I really didn't want something else to be wrong.

However, the doctor said that if I get to 140/90, we'll have to talk about putting me on medication to lower it. What would that mean for the times of day when my BP is actually low to normal? Could this indicate hyper-POTS?

[firewatcher]

I am orthostatically HYPERtensive. All my ANS testing came back with hypertensive responses (148/98, 145/117, 150/99.) Last summer my BP was really high (186/168) and my HR was incredibly low (40-50s.) I noticed that I was dehydrated when I'd get these hypertensive/bradycardic episodes and that they would improve with fluid ingestion. Vandy labeled me as having hyperadrenergic responses.

[autumn]

I am orthostatically HYPERtensive. All my ANS testing came back with hypertensive responses (148/98, 145/117, 150/99.) Last summer my BP was really high (186/168) and my HR was incredibly low (40-50s.) I noticed that I was dehydrated when I'd get these hypertensive/bradycardic episodes and that they would improve with fluid ingestion. Vandy labeled me as having hyperadrenergic responses.

That's interesting. My HR has been a lot lower than normal when my BP is high. I suppose it's possible I'm dehydrated; I really hate drinking. I think I had a few sips of coffee, a few ounces of water and half a glass of tomato juice yesterday. That's not enough, I know.

I think something is going on, though. I keep getting these episodes where I feel really shaky and like my HR is high, but instead, it's low for me (70s sitting). I'm temperature cycling rapidly and to extremes, really hot to really cold. I'm also flushing and itching quite a bit. I took my BP during an episode last night, and it was normal, but I did get an irregular heartbeat alert. I have trouble with a couple of arrhythmias, so I suppose it's possible that these episodes involve some cardiac craziness. I do remember this happening about this time last year, so maybe it's just a cycle.

Today my BP is dropping as soon as I sit up, and it's staying there. Haven't tried things out on my feet yet, but this is more "normal" for me. I know this is all unpredictable, but I'm so curious about what dictates how things will function one day versus the next. I've always loved learning about medical things (my grandmother was a nurse, and her career fascinated me to no end), and I wish we knew more about what's behind dysautonomia. For as sucky as it is, it makes for an interesting read.

[TXPOTS]

Count me in to the orthostatic hypertensive group. I can't blame dehydration because a recent blood volume analysis showed my blood volume was high, not low. I can't blame excess catecholamines, because they did not show a significant rise when standing. I had these tests done by Dr. Levine's team. The only explanation I got was possible parasympathetic withdrawal. My guess is the parasympathetic withdrawal is compensatory. I also notice that higher blood pressure= lower heart rate, but I am just as symptomatic as lower blood pressure with higher heart rate. My opinion changes with the season, but I like the theory of peripheral denervation or even NET deficiency/ hypermethylation of NET, since my ang II levels are low/ normal.

[sue1234]

TXPOTS, are you seeing Levine to do the exercise protocol?? Or, just seeing him in general for POTS??

Can I ask how he measured the blood volume?

[TXPOTS]

TXPOTS, are you seeing Levine to do the exercise protocol?? Or, just seeing him in general for POTS??

They told me I am leaps and bounds beyond their exercise protocol, so they wanted me to continue my own regimen. I have an athlete's blood volume. I have been told the jest of the exercise protocol, and for me, it wouldn't be much of a work-out. I'm training for a half marathon. Yes, I still have POTS, but I can run until the cows come home. I just saw him in general for POTS. It wasn't particularly helpful, but he may be great for patients who need to start an exercise program. It's weird to be able to run, but not sit up straight or stand. Annoying. I had the CO rebreather for blood volume.

[sue1234]

You sound like Julie--she can run miles, but not stand in one place. I was like that before it hit me strong--I could walk for hours, but couldn't stand still. I had to fidget and walk in circles or something to keep moving. Then one day, out of the blue, that no longer worked. I feel a good work-out program would be good for my body, but hard to overcome the POTS reaction to even get it started.

[TXPOTS]

You sound like Julie--she can run miles, but not stand in one place. I was like that before it hit me strong--I could walk for hours, but couldn't stand still. I had to fidget and walk in circles or something to keep moving. Then one day, out of the blue, that no longer worked. I feel a good work-out program would be good for my body, but hard to overcome the POTS reaction to even get it started.

I think at one point I read that Julie had coat hanger pain, and that is my absolute worse symptom.

When I first got POTS, I was very athletic, but I quickly went from being extremely fit to completely bedridden. My husband had to help me to the restroom and wash my hair. It was degrading. I was like this for a good year. My mom bought me this special recumbent bike that allowed me to lean back and pedal. I gradually made my come back. I feel so much better, but I am only a semi functional person with debilitating symptoms everyday. I'll take the 50% improvement though.

[Lovebug]

Hi TXPOTS...I was just like you. When I first got sick I was working out everyday (except Sundays). Then I started having diarrhea right at the end of my workouts which, of course, disrupted me. Eventually my abdominal pain got so bad that I quit working out and everything went downhill. It wasn't until a year later that I developed vital sign changes (ie POTS).

Sue, I found this website with a workout routine that sounds perfect for us. It is a "GO SLOW" routine that I never thought I could do but I'm going to give it a try. I agree with TXPOTS, I will settle for a 50% functioning if I never have to go back to what I was feeling at my worst. Here it is: http://www.hyperadrenergicpots.org/BENEFITS--OF---EXERCISE.html

I read that entire website last night and I really liked it. Great information!

[autumn]

So much information! I had never heard of coat-hanger pain, but I've been sent to physical therapy for pain in my neck, shoulders and upper back -- you know, the coat-hanger area. It's neat to learn what unexplained problems can fit under the POTS umbrella.

I'd love to be able to run. Good luck with your training, TXPOTS!

[sue1234]

So, coat hanger pain, could that be cervical neck issues?? Or, what could it be?

I did some leg lifts and arm-pulls on my home weight machine(the one that's been barely used in 5 years!). I am going to take it slow and try and build some muscle. I have to admit, immediately afterwards I felt energetic, which is unlike me. So, I picked up a little in my kitchen and washed clothes. By then, I was lightheaded so had to sit. But, it was nice. Maybe I bumped up my oxygen or something???

Thanks Lovebug, I am going to read that thoroughly about the exercise. I feel even if it's only two minutes a day for weeks, that will be better than nothing.

Anyone know how to do searches on this board that go back to the beginning? I only can go back as far as last year.

[TXPOTS]

My understanding from physicians is the coat hanger pain is caused by lack of blood supply to the bulky muscle groups of the neck, shoulders, and back of the head. The blood doesn't quite make it's way up in many of us with dysautonomia. Muscle tension can make this worse. I am sure I tense up as the day marches on. The pain goes away if I get in a recliner and lean back. This takes the orthostatic strain and tension off the muscles. I have even tried nitroglycerin since this is a crampy, ischemic type pain, but it ended up almost making me pass out. I have tried physical therapy on the neck and shoulders with no luck, as well as massage.